Visiting with my Dad

So, we celebrated Christmas early (on Saturday) to get up here to MA early and surprise everyone with a visit and some Christmas cheer. They've been expecting us on Christmas Day and we got here on Christmas Eve (afternoon). We surprised my mother as she dissolved into tears within a few seconds of opening the door. It's been a very tearful visit so far among all immediate and extended family members.

I'm so glad to be up here with my Dad--holding his hand, hugging him, kissing his head, telling him things, repeatedly expressing my love for him. The kids have been holding his hand and saying, "I love you, Vavo." And he's been calling out for Mark in earnest and asking Mark to hold his hand. Mark's got the patience of a saint and has been helping to move him, feed him, and keep him hydrated and comfortable. My Dad holds his hand and feels more secure with him here, not just because he’s a doctor, but also because he’s strong and capable and kind. And most importantly, he’s good to me, his little girl, and to our children.

It's good to be with my Dad. I love to feel his hand holding mine. He's so thin and so weak. It's exactly what I've expected but that doesn't make it any easier. I cried within minutes of seeing him and talking with him and holding his hand. How can that be him, so weak and elderly-looking in his hospital bed? How can he be so weak and sick? How can he be so dependent on others? How has it gotten so bad so quickly? How can he be dying?

It's a strange juxtaposition to hear my Dad's very labored breathing and his nearly-inaudible groans for help amidst the sounds of Christmas music. It's kind of depressing, to be honest. Cognitive Dissonance. It's so strange and melancholy to hear "Have Yourself A Merry Little Christmas" playing on the radio while you sit and watch your Dad fade away into the next life.

I miss him. I'm here with him and I miss him. I miss his healthier, more vibrant self. Parkinson's Disease is a thief. It's a cruel and horrible disease. I ache for him. He's trying so hard to tell us things and having such difficulty getting the words out. It's so difficult to not understand his requests. I don't want to make him feel badly so I tell him that I'm having a hard time understanding and could he please say it again. It takes so much energy and breath for him to repeat it and sometimes he repeats as best he can 5, 6 times before we maybe get what he's saying. It pains me to stand at his bedside and feed him bottles of Ensure and see his dry, dry toothless mouth and tongue trying desperately to suck and when I don't see the liquid rising through the straw, I feel pained at his extreme difficulty to eat (drink), to sustain himself, to keep himself alive. He's fading. What happens when he can't suck any more (which is what's happening)? My cousin's wife who has worked hospice for years says it becomes less of an issue as he'll be drinking less and less as he fades away.

Everyone's consensus has been that he's been hanging on to see us so that he can die. I've felt that, too. We got here yesterday and we've been visiting with him though he hardly ever opens his eyes. I know he knows it's us because he can say our names and squeeze our hands to let us know that he knows it's us. I feel so conflicted. I don’t want him to die, yet I do want him to die. I want relief for him. And I’d actually prefer that he die while we’re visiting rather than leaving and waiting for that phone call that I know will make me catch my breath and collapse sobbing even though we know it’s coming.

Yesterday, my eccentric uncle who lives next door threw his annual, traditional, Portuguese humongous Christmas Eve dinner with all the extended family. I forget how much I miss these crazy people who are my relatives. It’s like a mix of an episode of “Everybody Loves Raymond” and the movie “My Big Fat Greek Wedding” on speed. And Dope. And lots of alcohol. It’s a total riot. But even among the occasional insult and yelling, it’s full to the brim and overflowing with love. Functional or dysfunctional is up for debate, but it’s love, love, love. So many of us standing together in the solidarity of love and family and concern for my Dad around his bed. I’ve cried tears and my cousin Steve who is 47 years old reached across my Dad’s bed and held my hand. I spoke on the phone with my Dad’s sister who was hysterically crying in Florida because she’s torn about the holidays, putting on a happy face for her grandchildren but wanting to be with her “sweet, handsome brother.” She had heard him moan in the background and was inconsolable. My Dad’s brother came over with his wife. Both left in tears. Merry Christmas indeed. My loud, crass, potty-mouth, obnoxious (and I mean all of that lovingly) cousin Johnny who is sooooooo good to my Dad and so good at keeping things light and funny couldn’t take seeing his favorite uncle reduced to a weak body of bones and shallow breathing. My sweet, tiny, bewigged, adorable, oldest aunt (who’s well in her 70s) kept looking at my Dad and leaving the room shaking her head and saying nothing but “Shit!” And to be truthful, it gave us all a much-needed laugh through our tears.

Everyone’s done a great job making things nice and happy and upbeat for the kids. Fabulous really. Joe’s parties are always great. Jim’s been so thoughtful and generous and kind, making me cry in the process. And my brother has been my Dad’s right-hand man. It’s been so good to be together. I hadn’t seen my brother in over 4 years. It’s been good to be together and grieve together and talk about fun memories. My Dad still has his sense of humor. Sure, it manifests at 5 in the morning when we’re all trying to sleep and he’s telling us about how he isn’t the least bit amused by the lady who bought our old house in Swansea and had the audacity (I mean, really! Even I’m annoyed) to cut down his grapevines. And he has the wherewithal to ask the hospice nurse to put a sign on the door. “Sure! What would you like it to say, honey?” “Write ‘Get Lost.’” He’s generally so hospitable, but he’s tired and the steady stream of visitors sometimes wears him out. So, this makes us laugh. Again, much needed. I love this man.

He keeps calling me and holding my hand and telling me he loves me. I love him and keep telling him, too. I love him so much. He hasn’t ever said an unkind word to me. Ever. That is absolutely no exaggeration. If that’s not a testament to the kind of loving father that he is, I don’t know what is.

M, of his own accord, runs in and says, “I want to hold Vavo’s hand” and then walks out a bit later and says, “Hey, watch how high I can jump!” K says, “I want to see Vavo” and comes back and finds my Mom and I in tears as I feed my Dad. I tell her “it’s okay for people to be sad” and she hugs my Mom and makes her laugh.

So, everyone, including us, figures he’s been holding on to see us and then feel that he’s able to die. As I’ve visited with my Dad, I’ve been searching for some kind of sign from him that it’s true. He mostly talks to me with his eyes closed and my hand holding his, so I hadn’t gotten that look and confirmation yet. Well, yesterday, I got that recognition. And while it was the recognition and assurance I’ve sought, it frightened me. It startled me. I wasn’t so sure that’s what I wanted to see even though it kind of was. I remember it clearly. I walked into the room as many relatives stood around his bed in the dark. As it’s been. And then I noticed that his eyes were open and I picked up my pace, earnest to see my Dad’s eyes and have him see mine. He looked past everyone as I walked in the room and he did his own kind of double take. I saw it. And it made me catch my breath. As he made that recognition—that look of “Oh my gosh, that’s Stacy, that’s Stacy” his look was a mix of joy, relief, and sorrow. I don’t know how to explain it. It went quickly from joy and recognition to relief and he began to relax himself and cry softly and weakly into his shoulder. I knew instinctively what he was thinking. He was thinking, “I can die now.” I felt it. And it both startled and relieved me, too.

I’m jealous of my dad’s lecture to my brother. In the past few days, his speech has become so labored and nearly inaudible so that it’s difficult to know what he wants to tell me and I’m desperate to know. I’ve been wanting some one-on-one time with my Dad, some really good one-on-one time. With all the commotion of the holidays, visitors, and my Uncle Joe’s party, it’s not been easy to get that. As my mom and brother and I “took shifts” to get something to eat at Joe’s, I got that one-on-one time. Gladly. My cousin’s wife, Tracy got a nursery monitor so we can hear him cry out when he wakes. He’s sleeping so much more than before and he struggles to get voice and volume to let us know he needs help, food, water, attention, a hand to hold. My brother told me he’d go get a bite to eat while I stayed with Dad and that if I needed him to say so and he’d hear it on the monitor at my uncle’s house since he’s right next door in the condo that shares a wall with my parents’ condo. I started to visit with my Dad and have that talk with him—where I thank him, tell him I love him, that I know he loves me, and tell him it’s okay to die. I wondered if I’d be able to do it without crying. I doubted it, but I tried. I started strong anyway.

I remembered the nursery monitor and whispered into it to let my brother know that I was turning it off to talk with Dad. I switched it off, took a deep breath, sat by him, held his hand, put my head near his, and started to speak. He struggled to talk so I tried to guess what he’d say and asked him to squeeze my hand to let me know that he heard me and confirm what I was guessing. It went something like this:

“Daddy, I love you.”

A very labored “I love you, too, Bibi” that sounded like one longish word.

“Daddy, I know that you know that you’re dying. It’s okay. I love you, Daddy. And I’m so glad you’re my Daddy.” I started to cry but held it together. I told him that he’s always been kind to me. Always. And that I love him and know he loves me, too. “Right, Daddy?” He struggled to say yes. So I said, “Squeeze my hand, Daddy, to let me know.”

A gentle, yet strong squeeze.

“Daddy, I’m happy. Mark’s so good to me. We have great kids. We’re a happy family. Bobby (my brother) and I are friends and we can look out for Mom, okay?”

Another gentle squeeze.

“Daddy, it’s okay. You’ve worked hard your whole life and you’ve suffered so much and we don’t like to see you suffering. It’s okay, Daddy. It’s okay for you to die. We’re okay, Daddy.”

A gentle squeeze. “I know you hear me, Daddy. I know you know.”

And here’s where I started to sob: “I’ll miss you like crazy, Daddy, but it’s okay. I love you. You’re so loved. So many people love you. You’re a good man. Such a good Daddy. I love you so much.”

“IloveyouBibi”

And then we laughed and talked about how maybe in the next life when he’s not suffering and he’s more whole, he’ll be able to play tennis and soccer and checkers. He squeezed my hand. I kissed his head.

Since then, he’s sleeping more and eating far less. His breathing has gotten much deeper and erratic, sometimes stopping completely. He’s having Cheynes-Stokes respiration. He’s struggling to suck through his straws. He’s having such difficultly swallowing. He lays on his back all day and night and moans. We don’t know how much longer he has. I hope it’s soon. This is agonizing. I love my Daddy so much. And with each passing minute, I’m more and more nervous about leaving and about what’s next with my Daddy and with my Mom. “Silent Night, Holy Night.” The background radio music is so strange.